thenmama Posted October 19, 2011 Report Share Posted October 19, 2011 (edited) xx Edited March 27, 2013 by thenmama Link to comment Share on other sites More sharing options...
cab40 Posted October 19, 2011 Report Share Posted October 19, 2011 Hi all, Ds had further immune testing done b/c he can't seem to kick his recurrent strep-- even on abx. We had an appointment with our local doc yesterday, who was able to call up the preliminary results and print them for me. These were run by LabCorp. The vax titers confuse me a bit: The Strep Pneumonia is the 7 type. It says concentrations greater than .35 ug/mL are considered the minimum necessary for protection and maximal protection is > 1.0 He only had two of seven that were > .35 but the results were not flagged as low? His Tetanus results showed protection, but his Diphtheria results came up non-protective (only value given is < .10) and flagged as low. He has only had 4 DTaPs b/c we skipped the last booster that was due. But his doc yesterday said there should be something there if he had 4, though that may have been before we were looking at actual numbers on his results, so not sure the comment was directly related. His IgG subclass 1 result was low but not by much-- the ref range was 422-802 and his was 337. I'm guessing that's not enough as far as SD goes to be very significant? His IgG subclass 4 was high (range 1-84, his was 147). The one that most freaks me out is his IgM. He had a low quantitative IgM on his first round of labs in June but not very far out of range (his was 21 range was 24-210). This time, though, it's dropped farther and his quantitative IgM value was <6 and the ref range was 30-208-- so it looks like the kid has somewhere between none and negligible !? Our doc is going to consult with an immunologist, and we'll be going over these with our PANDAS doc, as well. Wondering if anyone has any insight into these results-- or has seen similar results with their kiddos and wouldn't mind sharing some info/experiences? Thanks, dear wise friends... TH Link to comment Share on other sites More sharing options...
cab40 Posted October 19, 2011 Report Share Posted October 19, 2011 (edited) Need more PANDAS docs! Edited March 23, 2012 by cab40 Link to comment Share on other sites More sharing options...
cab40 Posted October 19, 2011 Report Share Posted October 19, 2011 Oh sorry also could you share what kind of tx your son has? Age? Age of onset? ABX what kinds, when he ws dx'd, his history as much as you would like to share (or not)..... Link to comment Share on other sites More sharing options...
kimballot Posted October 19, 2011 Report Share Posted October 19, 2011 It is good that you are having an immunologist read it... but recognize that our kids may have immune deficiencies that seem "small" by the numbers, but in reality have a HUGE impact on their function. An immunologist who does not understand PANDAS may not recognize this. Do you have a PANDAS doctor that you work with? Has your child had repeated sinus infections or other respiratory infections? Also - I don't hear a lot on here about low IgM and I will be interested to hear what you learn about that. My son had low IgG and later low IgA. Link to comment Share on other sites More sharing options...
thenmama Posted October 19, 2011 Author Report Share Posted October 19, 2011 (edited) xx Edited March 27, 2013 by thenmama Link to comment Share on other sites More sharing options...
thenmama Posted October 19, 2011 Author Report Share Posted October 19, 2011 (edited) xx Edited March 27, 2013 by thenmama Link to comment Share on other sites More sharing options...
cab40 Posted October 19, 2011 Report Share Posted October 19, 2011 It is good that you are having an immunologist read it... but recognize that our kids may have immune deficiencies that seem "small" by the numbers, but in reality have a HUGE impact on their function. An immunologist who does not understand PANDAS may not recognize this. Do you have a PANDAS doctor that you work with? Has your child had repeated sinus infections or other respiratory infections? Also - I don't hear a lot on here about low IgM and I will be interested to hear what you learn about that. My son had low IgG and later low IgA. Link to comment Share on other sites More sharing options...
cab40 Posted October 19, 2011 Report Share Posted October 19, 2011 It is good that you are having an immunologist read it... but recognize that our kids may have immune deficiencies that seem "small" by the numbers, but in reality have a HUGE impact on their function. An immunologist who does not understand PANDAS may not recognize this. Do you have a PANDAS doctor that you work with? Has your child had repeated sinus infections or other respiratory infections? Also - I don't hear a lot on here about low IgM and I will be interested to hear what you learn about that. My son had low IgG and later low IgA. Link to comment Share on other sites More sharing options...
cab40 Posted October 19, 2011 Report Share Posted October 19, 2011 (edited) Not enough PANDAS docs! Edited March 23, 2012 by cab40 Link to comment Share on other sites More sharing options...
cab40 Posted October 19, 2011 Report Share Posted October 19, 2011 (edited) We will get there! Edited March 23, 2012 by cab40 Link to comment Share on other sites More sharing options...
cab40 Posted October 19, 2011 Report Share Posted October 19, 2011 Hi cab40, Our local doc called these labs up for me during a routine follow-up visit yesterday and he felt something wasn't right and wanted to investigate further. This morning I got a call from our PANDAS doc's office b/c they got the lab report and also want us to have an immunology consult re: Immune Deficiency. Spoke to our local doc a little while ago and he is going to connect us with an immunologist--b/c he also believes it is warranted and he already had a call in to one for a consult in before I called to let them know what PANDAS doc said. So, the wheels are in motion on that front. Nice for us that our 2 trusted docs always seem to land in the same place! As far as my guy (who just turned 7), goes: he was (mis)diagnosed with High Functioning Autism at 3: following major developmental regression/behavioral issues after a series of pharyngitis epsiodes, URIs, bacterial illnesses that he couldn't shake for several months. The same series of illnesses led to my older child being dx'd with OCD (now know it was PANDAS, wasn't the first exacerbation-- but at that time was the biggest to date). The HFA dx didn't quite fit and the symptoms/severity have waxed and wane over the years. Our dd wasn't dx'd with PANDAS until this spring, and our ds was just dx'd in August. He has responded very well to abx and steroids, but is having issues and flares b/c of his recurrent strep infections, which happen even on abx. This led our PANDAS doc to order further immune testing. He's currently staying on Clindamycin, which was originally going to be a short course, b/c when he goes off it the strep comes right back. We're very early in his PANDAS treatment so that's about all I have to tell so far. Will let you know how the immunology thing shakes out when we get in with someone. A little nervous on that front-- not sure the local U hospital Immunologists are on team PANDAS (yet). And I Googled the doc mentioned and turned up a post on this forum by someone who had a bad experience with her (bad meaning the doc didn't believe in PANDAS), and another parent who'd been told by this doc's nurse not to bother with an appointment for the same reason. But that was a few years ago, so perhaps she's been enlightened. Fortunately, I'd already asked our doc to knock out the "Are you a PANDAS believer?" question when he talks to these docs so we don't waste our time. Seems especially important with this because they'll likely want to give him vax in order to retest his titers. Not doing that dance with someone who doesn't understand/isn't sensitive to the risks to my child. Sorry it's so hard for you to find docs! Keep pushing and hoping! Our dd, who was very severe at time of PANDAS dx (and has had this for many years but was misdiagnosed with all manner of other things), is now doing remarkably well. She had IVIG at the beginning of the summer and remains on Augmentin. Will keep you posted as things develop. TH Link to comment Share on other sites More sharing options...
cab40 Posted October 19, 2011 Report Share Posted October 19, 2011 (edited) Glad Aug worked! Edited March 23, 2012 by cab40 Link to comment Share on other sites More sharing options...
kimballot Posted October 20, 2011 Report Share Posted October 20, 2011 Cab 40 - I feel so bad reading your post. I was where you are a year ago - a local HMO for insurance with no out of network benefits. I had to wait a while but I was fortunate to be able to switch my insurance to one that contracts with a national carrier and that has made all the difference for us. I am sending you a PM with a couple of ideas. There has to be a way to get your child the help he needs... Link to comment Share on other sites More sharing options...
peglem Posted October 20, 2011 Report Share Posted October 20, 2011 cab- I'm in AZ. There are some docs here who are familiar with PANDAS. Let me know if you want names- I'll PM some. Link to comment Share on other sites More sharing options...
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